After agonizing for two years about whether I would become my sister’s caregiver (I knew the time was coming when she would need care), I finally decided in favor of it and moved from Massachusetts to Tennessee in September 2009. My brothers and I had come down to Tennessee in June to assess her situation, and found her essentially bed-bound, existing in squalor, living on Coke and Little Debbie snack cakes, and our teenaged niece maxing out all the credit cards.
My sister has had Type I Diabetes since childhood, and wasn’t always careful about controlling her blood sugar or eating the proper diet. The result was a heart attack at age 52, followed by open heart surgery, a nearly lethal MRSA infection, kidney failure, and a long period of rehabilitation. I stayed with her for four months at that time, but she became strong enough to manage on her own with housekeeping help paid for by her siblings.
The decision to move away from my children, my friends, my church where I was a choir director, and a job I loved was difficult, but not as difficult to cope with as the guilt I knew I would feel after she passed away if I didn’t provide the care she needed. I was recently divorced, my children were grown and independent, and my career in health care was very “portable.” The logistics were not that difficult. The agonizing was not so much about the fact of leaving the life I had established as it was about the nature of our relationship. My sister and I have been at odds since birth. The responsible oldest child, serious, introverted, and prone to infuriating navel-gazing vs. the insouciant middle child, sociable and likable, who values style over substance. And now we have to live together. I was terrified that we would be arguing endlessly.
It turned out the only thing we’ve really argued over is her child who has not really been parented for years and now, at age 19, is a high school drop out, unemployed, and unwilling to help out at home in any way. She survives by stealing her mother’s credit cards, taking out credit cards in her mother’s name, pawning valuables, selling drugs, and finding people to mooch off of. And her mother enables her to continue in this lifestyle as a means of keeping her daughter dependent upon her, and therefore, closer to her. I refer to this home as the black hole of co-dependent misery.
Three months after moving here, I was diagnosed with Type II Diabetes (I knew I was pre-diabetic but soothed my anger and depression with my favorite fattening and sugar-laden foods anyway) and my osteoarthritis has been exacerbated so badly that ibuprofen has become the staple of my diet. Since I still have a mortgage on my condo in MA and am years away from retirement, I need to work outside the home in addition to taking full control of the household and yard, and trying to undo and prevent the financial damage that was and is being done by my niece. It is a bittersweet victory that my sister’s health has improved since I arrived; she is not at the hospice level as my brothers and I thought, but she is still slowly dying and is probably not eligible for a kidney transplant (it’s currently being evaluated). But this also means I will be down here for a much longer time than I had originally anticipated.
I feel very tired and alone. I work all day and have a 1 hour commute each way, so I’m out of the house at least 10 1/2 hours/day. My sister is transported to and from dialysis 3-4 days per week and then sleeps the entire day until I get home. After dinner and cleanup, I always have laundry; although she no longer urinates, my sister is incontinent of bowel, sometimes several times per day. (Tip: When dealing with incontinent care receivers–make up the bed with several sets of sheets, placing vinyl shower curtain liners between the layers. Then you or the care receiver can just roll off a layer, take it to the laundry or leave it for the caregiver, and get back in bed after cleaning up.) In the evening, she wants me to watch TV or talk with her until she falls back to sleep, then she sleeps fitfully at night. Some nights she is able to take care of herself, but frequently she will wake me several times to get her juice for low blood sugar, gatorade for low blood pressure, medication for high blood pressure, insulin for high blood sugar, etc. It’s like having a newborn baby, except I’m now 56, not 26.
I work very hard every day to be thankful that I have the ability to take care of my sister. I don’t want to feel resentful and I certainly don’t want to present that face to her, even when I do feel that way. I absolutely believe that I have made a positive change here, and know my brothers appreciate the fact that I am able to care for my sister; neither are in a position to do the same due to spouses, young children, farm ownership, small business ownership. Both live in the Midwest, but are willing to come down to help for short periods if necessary. But I worry that life is passing me by. I spent 27 years in marriage to an emotionally and verbally abusive man, and now I’m in an open-ended caregiving situation. It feels very selfish to say this, but I look forward to the day that my life is actually my own.
Hi Mary, I am so happy your sister connected with people she knew the past couple of weeks. Wish there were something to say to ease the pain and loss. Know that there are people who care here on DLH and even though we have never met, we are not strangers. Please check in often if not daily to let us know how you are. With love, Melisa.
Like
0
An update: My sister Sarah passed away early this morning, quickly and peacefully. During the last month of her life, she set up a Facebook account and connected with old friends from high school and previous workplaces. She went to a mass retirement party for people from her last place of employment and re-connected with her old workmates. She sent emails out to relatives, some as recently as yesterday, and generally seemed to be doing better than she had in years. And then, in the beat of a heart, hers stopped. As trite as it always sounds when other people say it, I truly believe she is in a better place. Vaya con Dios, my beloved sister.
Like
1
Mary, she is in a better place, and so are you. You sacrificed so much to make the move and care for her, such a selfless gesture of love, and you did try. 15 months is a long time, longer than many could have hung in there for, under the circumstances. I know you’re going to feel guilty that you weren’t able to stay the course to the end, but Mary, we’re all responsible for the lives we make here. Your sister was responsible for hers, and you for yours. You tried to help her every way you knew how, but some people can’t seem to get out of their self-destructive patterns to listen to wise counsel. You stayed long enough to see that nothing you did or said would help, and you got out before your own health was irreversibly damaged. That’s just smart. You and your brothers divided up the responsibilities so beautifully – well done! I’m sorry for your loss, I know that despite all the hurtful things she said and did, you will still grieve for her and miss her.
Like
0
Sweet Mary, please accept my sincere condolences on the loss of your beloved sister. It was for me, and might be for you a relief ,like when my Dad passed, knowing they are in a place of true peace. But I totally feel your pain, and I am sending you much love and strength as you move forward towards your place in life, knowing full well you did a great job of care giving…my thoughts and prayers are with you and yours.
~Char
Like
1
Mary,
Thank you for letting us know about your sister Sarah’s passing. I thought it was so beautiful that her last days were spent in communication with those she had cared about. As I reread your story of caregiving, I was struck again by your selfless act of caring for her those 15 months. I believe even your leaving was an unselfish act–sometimes the hardest thing we are forced to do for those we love. Remember all the positive things you WERE able to help change about your sister’s situation and that even after you returned home, you CONTINUED to care for her.
May you find peace in knowing you gave everything that you had to give. I pray that your own situation is going well since you have been back with your children and friends in Massachusetts. You have done so many courageous things in the last few years, including the ending of your long, abusive marriage. Praying that you are finding your own peace and happiness.
Betsy
Like
1
Mary, Your story is a wonderfully inspiring example of selfless caregiving–whether you feel that way or not. Actually, it took a lot of courage and guts to get out of the co-dependent black hole that your sister is sucked into, and it may be her only chance of seeing reality, even though it seems unfortunately unlikely. It sounds to me and others that you and your brothers are doing the most loving thing you could possibly be doing at this time.
Like
4
I’ve put off writing to DLH again because I feel like such a failure amongst all the selfless caregivers here. After fifteen months with my sister, I could no longer take it in the “black hole of co-dependent misery.” My niece continued to steal money from her mother’s accounts, max out credit cards, sell possessions, and she eventually stole my credit card and managed to put $1,000 on it in less than 24 hours. Through it all, my sister remained in complete denial about her daughter’s problems and insisted that I just wanted “to see the worst in her.” She even accused me of making up these stories in order to destroy her relationship with her daughter. I lost a friend who became tired of hearing about the situation. I felt powerless and alone.
So I left and returned home to Massachusetts last January, telling myself I did the best I could; and yet the guilt was (and is) overwhelming. I replay those fifteen months over and over, wondering how I might have done things differently to be more effective.
Since I left, my niece has succeeded in bankrupting my sister, emptying even her late father’s pension account. Between what was in retirement accounts and unpaid balances on credit cards, she has stolen about $200,000. For two months she even stole the Social Security Disability deposits within hours of their appearance in my sister’s bank account. Three times my sister was dumped at the ER and left unaccompanied.
My brothers and I requested an emergency court hearing during her last hospitalization and assumed involuntary conservatorship. One brother makes health care decisions, the other has assumed financial responsibility; and I take care of arranging home services, resolving everyday problems, checking on her daily, and staying one step ahead of her daughter.
So a new type of caregiver emerges—the long distance caregiver! I still feel as though I failed my sister. She lives with a sociopath who verbally and emotionally abuses her rather than someone who cares about her. She lives without any money or credit cards; the choice to order a pizza has to go through a brother 1000 miles away. Someone else makes decisions about everyday activities. She’s lost her autonomy and authority, but it’s the result of her own inability to identify and deal with reality.
This long distance care giving can, at times, consume a lot of time. But there is a much more equitable division of labor among siblings, and I don’t have the daily distress of trying to right an “unrightable” situation.
Like
1
Oh Mary, if there is one thing I wouldn’t call you it’s failure. You gave a most desperate situation your very best, and for a long time. To use a tune and change the phrase, from James Taylor when he wrote about mill work: “cargiving aint’ easy…. caregiving ain’t hard, caregiving ain’t nutin but a life altering job…..(sorry JT)
You gave your sister the best of care, and good advice, whether she took it or not, at this point, you have to let it go. Yeah….I know easy for me to say or type in this case, I really can’t imagine how hard it is to do ,but you have to try, I am sorry for your sister, and for your niece, and will continue to keep you all in my thoughts and prayers.
~Char
Like
2
Dear Mary;
From a “professional” caregiver’s perspective, you are amazing! What you see as “failure” I view as utter tenacity, responsibility, a refusal to give up, and deep love! The most difficult thing for a personal caregiver to struggle with is having their loved one REFUSE to do anything for themselves; instead, they choose to put themselves in even more physical AND emotional danger. Having had extensive experience with ESRD patients, if I would have been on Sarah’s case, I probably would have recommended you return home. Despite the lack of care or concern shown to Sarah, she will continue to live in her fantasy world with her Daughter being her “family”. It appears her ESRD and health is fairly advanced; at this late stage, it probably would not be beneficial for her face reality. I wonder if your Sister knows what her daughter is, she just cannot face it.
So many families would have washed their hands of this situation, and never given a second thought. You have gone above and beyond for your Sister! When those crazy thoughts of “failure” sneak into your head, you need to remind yourself “my Sister CHOOSES to live this way”. You are doing so much more as a “long distance caregiver” than so many do when they are in the same city! You have my utmost admiration and respect!
One practical thought; if your brother has assumed financial responsibility, it should be possible to route her SSI checks to his bank account. If you have an involuntary conservatorship, it might be possible to secure the home. Best of luck, and as always, please take care of you! Keep in touch! Lynn
Like
2
My brother has rerouted all her money and deposits to an account that she knows nothing about; if she knew where it was her daughter would eventually get the information out of her. My sister can’t buy a pack of gum unless she finds a dollar on the ground. A sad way to live, but necessary. Thank you to everyone who responded. This is such a wonderful community!
Like
3
Mary, you are the most selfless person I’ve ever heard about. You gave up your own life and moved hundreds of miles from home to care for your sister. You tolerated an impossible situation for 15 months and even when you felt you had to leave, you were still handling everything long distance. I think you are an amazing, stupendous, incredible, wondrous, caretaker!!!!!!!!!!!!!!!! Mary R.
Like
2
Hi Mary;
Meeting with the nephrologist for an office visit rather than when dialyzing is ‘best practices’ and especially needed if your sister’s health is so tenuous. However, with the budget crunch and expectations on productivity and billing, much of the time if ‘falls by the wayside’. Unfortunately it is becoming more of a ‘gray’ area and Medicare still reimburses. Since you are her primary caregiver, you must be included, especially when medication changes occur!
Typically, there will be some type of private exam room or office in the dialysis unit. I would suggest talking with the charge nurse or social worker, and ask them to schedule a consultation with the entire team before one of her appointments. If they are unable or unwilling, then my next suggestion would be to tell them you would like to have her physician and team scheduled to meet at the beginning of her treatment. Unfortunately it is not very private but I think it would be great if you could begin a dialogue. The medication protocol and compliance is critical for a renal patient. And it is critical for YOU; if Sarah’s health is stable it will mean a little less stress on you!
I would recommend making contact with the social worker and asking her to arrange it. If she is a strong patient advocate, she can hopefully make it happen. If not, please do not give up! I am fond of saying “EVERYONE has a supervisor”:)
Ultimately though, I believe Jean said it best; “Your sister made her choices”. Sarah has lived with diabetes 40+ years; she was responsible for her health and choices for most of her life. You are not being fair to yourself by accepting responsibility and feeling guilty for your mixed emotions. You made an incredibly unselfish choice; you chose to be a caregiver. You boarded a train to take a somewhat unpleasant, long trip, knowing the destination you were heading. Is it possible to selectively share some of your emotions with your sister? Are you emotionally close with your sister? Does she share fears of dying, the journey, or the process? I would think she is somewhat overwhelmed also? I understand care giving is a second, full-time job for you. I hope you will be able to obtain some support and relief from home care or other volunteer organizations in your area. Good luck and please update us! Lynn
Like
0
OMG, the phrase everyone has a supervisor hits home here. Lynn thank you so much for reinforcing that. It matters, ask Questions and do not back down until you or the patient understands.
~Char
Like
0
Mary, I think you are one brave woman. I hope you can take a minute or two each day for yourself and exhale. It’s really hard I know but you deserve it. I too know the feeling of being exhausted and alone. You are never going to be alone here!! My thoughts are with you and hope to see you posting here often. I always find listening to Dan’s music, puts me in a better place, even if its only for a short while, until you have to get on with the world.
Be well , and take some time for you today, if possible.
Char
Like
0
Wow! I haven’t been here for several days and I’m amazed and the number of responses. Debbie and Lori–I must say that one meets the nicest people on Dan Fogelberg fan sites (RIP River of Souls)! You have both become so dear to me; you’ll never know how much! Lynn, thank you for your invaluable information. I have discussed POA and/or voluntary conservatorship with my sister; she is “thinking about it,” (translation: nothing will happen). She is hospitalized right now and came a hair’s breadth away from being put on a ventilator due to very low blood pressure and severe shortness of breath. So we have decided we need to do a medical POA, and while she’s gone, I’ve taken possession of credit cards, car keys, etc and think I might just hang on to them unless she threatens to have me arrested. My own version of involuntary conservatorship. Jean and Laurel, you’re so right. I need to sit down and consider what memories I will take from this time that are positive, that are life affirming. But when I try to think nothing comes to mind. My mind is too conditioned to think about what task needs to be done, not what kind of life I’m going to create. A good exercise for those insomniac periods. Thank you all so much for responding.
Like
0
Oh, and Lynn: I didn’t know that Sarah should be meeting with her nephrologist and diabetic team every other month. All her “appointments” are done while she’s being dialyzed and the nephrologist is passing through, and she NEVER remembers what was said or decided. “Why did the dr discontinue that med?” “I don’t know.” So frustrating! Thank you for that information.
Like
0
Mary—I forgot to ask if you have spoken with your sister about becoming her Power of Attorney? (This is also an area in which the social worker is trained and is able to act as an advocate/mediator for you both.) This might alleviate the enabling issues if your sister is able to honestly say she has no control over the finances. This is assuming she will allow you to make decisions which will probably infuriate her daughter, and you are comfortable making those unpleasant decisions?!! From the tone of your letter, it sounds like you are at the point where you will be quite comfortable making those unpleasant decisions:) Good Luck!!
Like
0
Lynn, thank you so much for your valuable professional knowledge and suggestions. ~ Jean
Like
0
Mary—Please allow yourself to grieve for your life which you have chosen to put ‘on hold’ to care for your sister!! As a previous diabetic educator and dialysis social worker, the care you are giving your sister is priceless! However, to continue to give you must take care of yourself!
Please remember your sister has a (Medicare Mandated) “team” in the dialysis unit; talk with the social worker, nurse, and dietician! Your sister should be meeting with her nephrologist and team for an ‘office appointment’ (not while dialyzing) every other month. I encourage you to attend one of these appointments with her. The team might be able to give you ideas how to help your sister become more independent through the night. Talk with them to determine how much self-monitoring your sister is capable. (I also found many of my patient’s depressive symptoms were reduced if they DO have more control over their lives!) After meeting with my patient to determine mental status, reviewing lab work and numbers, I worked with many caregivers to develop a plan. Many of my patients would have orange juice, Gatorade, blood glucose tester, medication, and a pre-loaded insulin syringe on their bed stand every night. Additionally, the renal social worker will be able to check into possible home health care since it would probably need to be ordered by her nephrologist.
Regardless of what type of problem-solving you and your team ultimately decide, please reach out to them! They are also there for YOU because you are providing the primary care for their patient! Schedules are busy, many caregivers work outside the home, so feel free to give the social worker a call. Good luck and let us know!
Like
0
Mary, You certainly have your hands full and your sister is very fortunate to have you. I only hope and pray you find some peace in this situation. I have younger siblings and do not have a good relationship with any of them, so I understand a bit. Please take advantage of any assistance you can get since you are working outside of the home and please, take care of you. There are respit volunteers possibly who can come in and at least give you chance to get out. Remember, you are not alone. Please keep us informed of your progress. This is a wonderful site and I have found much strength and comfort here and hope you do also.
Blessings! Susan
Like
0
Hi Mary — I don’t know you personally, but I appreciate your honesty regarding your care-giving situation. Sometimes care-giving comes with the unfortunate extra twist of familial discord and many past hurts or difficulties between the people involved. It is not easy to admit that, but it exists, and probably more often than we think. The resulting guilt we experience is a huge added burden, one that can be heartrendingly intense. It is wonderful that your sister is doing better with your help, but I am concerned about you burning out.
I am in agreement with Jean as to getting a Home Health Care person to help out if you can. Also, I do hope that each of your brothers (and/or wives) can come for a couple of days every now and then to give you some respite. I know you said they have other pressing obligations, etc, but maybe they could trade off, one of them putting in a day or two each month at least to help with laundry, providing some easy meals, and keeping your sister company so you can get out of the house for a while and do something you enjoy. Your sister is their sister too, and even if they cannot do what you are doing, they can do something.
Also (or instead), maybe hiring some help to do the grocery shopping and some house-cleaning for you would help take some of the load off. Where I live, we have a local grocery delivery service that is quite reasonably priced (and ordering online helps cut down on impulse purchases which saves money too). It is easy, saves a lot of time, and saves money in the long run. If you have something like that in your area and are not using it, I encourage you to give it a try. Currently, my husband and I are doing our own grocery shopping at ALDI, but when my dad was ill and my mom was in tough emotional shape all last year, we ordered our groceries delivered and we will do it again if the need should arise. Please do look into options to care for yourself. You are worth it, and your positive impact on the world has more value than you realize.
All the best, and if you can post an update here to let us know how you are doing, I would love to know.
Laurel
Like
0
Mary, My dear friend, You are a blessing for everyone you meet. I know I am 4-5 hours away, but I am here for you my friend. Lets do a girls weekend… it will do us both good. Much love, Lori
Like
0
Mary, thank you for sharing your story with us. You obviously are anything BUT selfish. You agonized for two years over the decision to care for your sister, so I know you gave this a lot of thought. Thanks to you, your sister’s situation is much more stable now, so perhaps you might consider getting someone from Home Care or Hospice to come in one day a week to give you a break? Once you find someone you trust, and that your sister likes, then you could arrange for two days, etc.? I don’t want you to have to watch your life pass you by either. Your sister made her choices, and you must make yours. You are a good sister, and what you’ve done is marvelous, but when you’re a very old woman looking back on your life, what memories will keep you company? You have to make those memories now. Less guilt, more life, please. ~ Jean
Like
0
Well put, Jean. I’ve said similar things to Mary, who is a personal friend, in and among my plaudits for her unselfish choice.
I’ve spoken about this site to her several times, expounding its support and suggestions. Her response was usually, “I’m too busy being a caregiver to visit a caregive site” but she made it. I’m so glad to see her here.
Like
0
Jean — what you said about making good memories now, about less guilt and more life… Thank you, thank you, thank you!!
Laurel
Like
0